Seeking improved end-of-life care

MILWAUKEE — Efforts in La Crosse, Wis., to improve end-of-life care for people with serious illnesses has drawn national and international attention.

A driving force in the initiative has been Bernard "Bud" Hammes, director of Medical Humanities and Respecting Choices, a program that focuses on advance care planning, at Gundersen Lutheran Health System and Gundersen Lutheran Medical Foundation.

Hammes, who has a doctorate in philosophy from the University of Notre Dame, also is a professor of clinical science at the University of Wisconsin-La Crosse.

"Having Your Own Say: Getting the Right Care When It Matters Most," a collection of essays on end-of-life care edited by Hammes, was published this year. Below is an edited transcript of a conversation with Hammes.

Q: What is the key lesson from "Having Your Own Say: Getting the Right Care When It Matters Most"?

A: There is strong evidence that we can provide much better care for patients who have serious illness than we currently are providing. The authors in this book have created and implemented models of care that lead to higher quality of life for more patients with serious illness. They get acutely sick less often. They need to go to the hospital fewer times. They spend more time with their family. Their wishes are better understood and more carefully honored. And their survival is the same or better than in the existing model of care.

Q: What is an example of a model?

A: At Gundersen, we approach patients with serious illness and say to them, "Let us help you take better care of your illness by having a very careful conversation about what it means to live well. What are your goals for care? What are the most important ways we can help you?"

We provide them with a nurse care coordinator who helps them through telephone calls, visits, navigation of the health system, so things don't fall through the cracks. We want to provide them with specialty services so symptoms are managed as best as possible.

This is much more supportive, coordinated and patient-centered care. That's the model, and what we have found and what others have found, is that when you do this, patients don't have as many episodes of acute illness requiring them to go to the emergency department, requiring them to go to the hospital, and so in that respect their quality of life stays better. It means they function better, feel better and have more time to spend with their families.

Q: Will other health care systems say they are doing this?

A: They would not. This clearly is something different than what is traditionally provided — this level of supportive care coordination. This attention to the patient at this point in their life is not something that is commonly provided. That is not to say that other people aren't trying to take good care of patients. But this is a very different approach to care.

A: Aetna's model allows patients with advanced illness to go into a hospicelike care with 12-month life expectancy, but when they elect to do that, they do not have to give up access to any other services or any other benefits.

The traditional model in this country is when you go into hospice, you can't get anything else. Most of us believe that is a decision so dramatic for most patients that it undercuts what you need to provide.

Our current health care system is extremely fragmented, particularly for patients with serious illness. Communication between settings of care often doesn't work well. There are just gaps. The second kind of fragmentation is that we might check in with patients about what's important to them — about their goals of care, about their preferences and so forth … but we might not check in again. And what we know is that as illnesses change over time, the patient's views change, and we need to have an ongoing conversation with them about that.

And finally, the system we've established is fragmented because as patients get quite ill, we give them this black-and-white choice: Either you stay in the current system or you go to hospice. That's a dramatic decision for patients, so most of them only choose the hospice option only when it is extremely clear that there really are no other options.

Q: Aren't hospices services being used more widely?

A: Even though hospice is widespread, hospice still suffers from patients only getting into hospice with relatively short life expectancy, because they have to choose either/or. If we started to provide the supportive care much earlier, we have an opportunity to really improve patients' lives — to better understand how we can match care with the patient's goals and values.

Q: What would this model look like?

A: What's different about this model is it organizes care coordination across settings of care in a more effective way — the medical management of symptoms and other kinds of problems the patient is facing, making sure there is a good plan in place for transition from one setting to another, and then keeping in close contact with patients about how they are doing and what they want out of the health care system, so there is a better match between what we do and what the patient wants us to do.

Q: Does the mindset of medicine need to change?

A: The basic principle — doing everything you can — doesn't change. What that means changes. Doing everything should include, in my view and in the view of this book, the intensive coordination of care for people with serious illness.

What we all want is the highest quality of care possible. For people with serious illness, this takes a more intensive concentration of services and coordination of care than our current model provides.